• Maartje S Klapwijk, Sascha R Bolt, Jannie A Boogaard, Maud Ten Koppel, GijsbertsMarie-José HeMHEnd-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium., Carolien van Leussen, B Anne-Mei The, Judith Mm Meijers, Jos Mga Schols, PasmanH Roeline WHRWZorginstituut Nederland, Diemen, North Holland, The Netherlands., Bregje D Onwuteaka-Philipsen, Luc Deliens, Lieve Van den Block, Bart Mertens, Henrica Cw de Vet, Monique Aa Caljouw, Wilco P Achterberg, and Jenny T van der Steen.
• Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands.
• Palliat Med. 2021 Dec 1; 35 (10): 1951-1960.

BackgroundDementia palliative care is increasingly subject of research and practice improvement initiatives.AimTo assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers.DesignCombined analysis of eight studies with bereaved family caregivers' evaluations 2005-2019.Setting/ParticipantsFamily caregivers of nursing home residents with dementia in the Netherlands (n = 1189) completed the End-of-Life in Dementia Satisfaction With Care (EOLD-SWC; quality of care) and Comfort Assessment in Dying (EOLD-CAD, four subscales; quality of dying) instruments. Changes in scores over time were analysed using mixed models with random effects for season and facility and adjustment for demographics, prospective design and urbanised region.ResultsThe mean total EOLD-SWC score was 33.40 (SD 5.08) and increased by 0.148 points per year (95% CI, 0.052-0.244; adjusted 0.170 points 95% CI, 0.055-0.258). The mean total EOLD-CAD score was 30.80 (SD 5.76) and, unadjusted, there was a trend of decreasing quality of dying over time of -0.175 points (95% CI, -0.291 to -0.058) per year increment. With adjustment, the trend was not significant (-0.070 EOLD-CAD total score points, 95% CI, -0.205 to 0.065) and only the EOLD-CAD subscale 'Well being' decreased.ConclusionWe identified divergent trends over 14 years of increased quality of care, while quality of dying did not increase and well-being in dying decreased. Further research is needed on what well-being in dying means to family. Quality improvement requires continued efforts to treat symptoms in dying with dementia.

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